Read more by Sarah-Louise at Ink in Strange Places.
Once upon a time, I woke up on fire. This burning was one of invisible flames, curling themselves around me and offering nothing but excruciating pain and the sort of exhaustion which bears down on you like a weight your whole body must carry. I have been burning for nearly fourteen years and I have learned a new lesson in survival and overcoming every day of that time. In those beginning years, I learnt much of brokenness too; how a heart could hold itself together even when it sometimes didn’t wish to. How its fluttering might be a small sound compared to the screams of the chaos, but it was one loud enough to deafen everything that tried to stop it, all the same.
This year already, a firebird has left us.* The only firebird who ever spoke of her experience in a way I truly recognise. She left because her time of being able to get comfortable was ending; the few clothes and bedding that didn’t make her skin feel like it was slicing into her were fraying. I cried and cried when I read about that, because I know that battle. How, when you find something that dims the flames a little, that gives you a little breathing space from the pain, you hold onto it and when it proves mortal, as all things do, your terror is visceral. No one, you see, should be left to burn without aid, and aid is so difficult to find.
I respected her leaving, because we do not owe other people the continuation of our pain, but I wish she had stayed. Not only because being a firebird can be lonely enough that we need each other. Not even because I believe we must all try to stay, in order to prove it is possible to stay. (The stories we tell ourselves, and each other, about what is possible with our suffering, and with regards to our recoveries, are absolutely imperative.) No, I mainly wish she had stayed because I know it is possible for it to get better, even as we acknowledge it is also possible for it to get worse.
For the first seven or eight years it was so toweringly terrible, for me, that I had no voice, not even my own, and no interaction with those I loved. I could not have foreseen, or truly had faith in the idea, that there was any real life I could rescue from the ashes of the one that had been taken from me. If the future was a book that would be thrown into the fire, presently, I did not think any words it might hold could actually comfort me. I promised myself that if I held on, It would be worth it, and I believed myself to be lying. The only way out, I was afraid, was dying. The fire would surely consume me alive. No one could withstand it. And yet…
The fire still finds fuel in noise and discomfort and all manner of things it shouldn’t, but even so, it is far less brutal than it used to be. It was like Genghis Khan on a rampage. Now it is like Ghengis Khan on a rampage, with table manners.
The first truly magical thing that happened to me once I could move a little despite it, was the arrival of foxes to my garden. First a Male Fox, with a scruffy tail and then his sweetheart. Soon, small foxes, whose tails had not even become luxurious brushes yet and who squabbled over the food we gave them.
To know there is life nearby, being sustained by us, is so important. Whether it is a plant who needs our watering can, or a small fox kitten, wanting more than his share of the eggs, or a slice or two of ham.
For a while, before the fire stoked itself unkindly again, I had the magic of my neighbour’s little boy as well. To see the world through the eyes of a two year old is such a gift. His favourite hobbies included having me turn a light switch on and off for him, near endlessly, because to him electricity was a mystery more profound and beautiful than a pumpkin becoming a carriage. That was also the first time, in a long while, that my illness could feel irrelevant for whole hours at a time. Children see so much that is not there, and they do not see a great many more things that are there but ought not to exist. As far as he was concerned I was like every other grown up.
Being well enough to stand to see the Perseids one year and pin all my wishes on their tails, and to be soaked by rain on a rare moment outside, and to speak again, were such immense blessings, but they are not the only ones I have been given.
One of the first people I could talk to once more was a man I have known nearly all my life. His name is Shaun and I called him as often as I could, holding the phone, which still felt too heavy in my grasp, and listening to his kindnesses and his wisdom pouring into me. He gave me ideas and stories and thoughts that could then stay with me through the next onslaught of harder days. He gave me a light to go towards, because our phone calls were (and still remain) a great brightness. My favourite thing about him, perhaps, is that he is an adventurer. A man who might find his place in any tale of the sort read by a brave child balancing in a summer tree, which tells of courage and ingenuity in the face of life. Life, which, invariably, turns up unexpectedly and with its own daring plans.
Over the years, and thanks to the Internet, I have been able to meet new friends and reacquaint myself with old ones. Community is a basic human need, and, being confined to one room or one house makes it harder to come by. I have discovered though, that what you find of it, in the hardest of times can be more exquisite.
Someone I love dearly considers us a murmuration. Like starlings, taking to the sky together, even though the oceans may get in our way. I met many of my murmuration either because they are ill, too, or because I happened to be debating, and sometimes quite vociferously disagreeing, with them. We are a diverse bunch, but what I think we have in common is a willingness to care for each other. That kind of compassion, and camaraderie, doesn’t just move the mountains in our way, it does a substantial amount to flatten them.
If I could go back to the worst years, and tell myself anything, it would be that finding those people genuinely made all of it worthwhile. I might throw in an anecdote about attempting to buy magic beans off one of them, or watching the eclipse with another, one marvellous night, or perhaps try to somehow montage our daftest moments (there have been many) for the version of me who was losing hope in what might come next, but I can’t. So I must remind myself now, when it gets to be too painful to bear, that perhaps future me might one day say the same. And I want to find out.
I have a life that contains love, and love is the one thing we have that is always, and only, redeeming. It takes the fluttering and broken heart and makes it louder, still.
There is a kind of love that we read about in fairytales, too. Boy meets girl. Boy is definitely a prince. There may be a witch or a wizard who never thought highly of being good and enchantment ensues. At the grand age of almost thirty I had, reluctantly, begun to believe it might not exist in the real world. Certainly not for someone who sleeps such a disproportionate amount as I do, and who has so many limitations.
I was willing to resign myself to the possibility, and challenge, of increasing eccentricity, but I have found that love as well.
He is the kindest person I have ever met.
The first year I burned, I told myself a fable about a girl who couldn’t leave the tower of a castle. She felt rather alone, and saddened by all the things she couldn’t reach. One day, she found a way to make her ice skates into sky skates, and so, during the night when the rest of the castle was sleeping, she could open the great tower window and skate across the starlight. Through clouds and over cities, taking in the sight of the slumbering world below and sometimes encountering night owls of both the feathered and the non feathered varieties. I knew she felt freedom. I knew that sometimes she danced across the air, and her heart was full of something bigger than all of her pain.
I didn’t know, though, what that felt like until I met Nathan.
I didn’t understand what it was to be able to soar, to float and to glide, way up high, with something that is a lot like freedom racing through me, and with a gentleness in my heart that is nonetheless so bright it makes the moon look small and faded.
I didn’t know that love, as well as a power, and a redeemer, could feel like protection. That it could help me guard myself from the fears that sometimes prowl like wolves around me. That it could stand between me and even the flames, so that despite their rages, I have something that can soften the blow.
What I wish to tell you, in all of these words, and in case you have forgotten, is that life can still be worth the price it asks of us. Even when the price it asks is more gold than you have ever kept in your kingdom. We get to decide, each of us, alone, if it is, and that is our choice. There is power in that, too.
No one should suffer like a firebird, or in the many other ways people have to endure the seemingly unendurable.
It remains possible though for all manner of miracles, both the tiny and the profound, to come to pass, if we can only find a way to hold on.
*Anne Ortegren wrote about her long struggle with ME/CFS, and about the suffering that had become unbearable in a goodbye letter to the ME/CFS community.